Broadening community engagement in clinical research: Designing and assessing a pilot crowdsourcing project to obtain community feedback on an HIV clinical trial
Broadening community engagement in clinical research: Designing and assessing a pilot crowdsourcing project to obtain community feedback on an HIV clinical trial
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DOI：
10.1177/1740774520902741
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发表时间：
2020-02-03
期刊：
影响因子：
2.7
通讯作者：
Tucker, Joseph D.
中科院分区：
文献类型：
--
作者：
Day, Suzanne;Mathews, Allison;Tucker, Joseph D.
背景/目的社区参与被广泛认为是临床试验的重要一步。参与临床试验的一种未充分探索的方法是众包。众包涉及社区成员试图解决一个问题，然后公开分享创新的解决方案。我们设计并进行了一项试点，使用众包方法获得社区对艾滋病毒临床试验的反馈，称为联合社区参与策略研究的可接受性。在这项工作中，我们描述和评估的可接受性的联合社区参与战略研究的众包活动，以研究众包的机会，作为一个临床试验社区参与strategy.MethodsThe众包参与活动参与的可接受性的联合社区参与战略研究的背景下进行的第1阶段艾滋病毒抗体试验（ClinicalTrials.gov标识符：NCT 03803605）。我们设计了一系列的众包活动，以收集关于这项临床试验的三个方面的反馈：知情同意过程，参与试验的经验，以及艾滋病毒临床试验的公平/互惠。所有众包活动均向年满18岁的公众开放，并征求当地社区的参与。与临床试验团队的代表进行了小组讨论，以获得反馈意见的效用众包作为社区参与战略，为未来的临床试验。ResultsCrowdsourcing活动利用创新的工具和结合的人和在线参与的机会，从事社区成员在临床试验的反馈过程。通过将临床试验的知情同意书转化为一系列互动视频模块，收集了社区对知情同意的反馈，并在公开讨论中进行了筛选。对试验参与经验的反馈涉及设计三个虚构的小插曲，然后将其转化为动画视频并在公开讨论中放映。最后，在艾滋病毒临床试验的公平/互惠的反馈意见收集使用众包的想法比赛与在线和亲自提交的机会。共有38名参与者参加了我们的公开讨论活动;我们的创意竞赛收到了43份提交材料（27份亲自提交，16份在线提交）。Facebook和Twitter的指标表明，他们对该项目的参与程度很高。临床团队发现众包主要用于提高知情同意和试验recruitment.ConclusionThere是足够的奠定社区的兴趣，公开呼吁反馈的设计和临床试验的进行，使众包既新颖又可行的参与策略。鼓励临床试验研究人员考虑实施众包的机会，从社区的角度为试验过程提供信息。
Background/AimsCommunity engagement is widely acknowledged as an important step in clinical trials. One underexplored method for engagement in clinical trials is crowdsourcing. Crowdsourcing involves having community members attempt to solve a problem and then publicly sharing innovative solutions. We designed and conducted a pilot using a crowdsourcing approach to obtain community feedback on an HIV clinical trial, called the Acceptability of Combined Community Engagement Strategies Study. In this work, we describe and assess the Acceptability of Combined Community Engagement Strategies Study's crowdsourcing activities in order to examine the opportunities of crowdsourcing as a clinical trial community engagement strategy.MethodsThe crowdsourcing engagement activities involved in the Acceptability of Combined Community Engagement Strategies Study were conducted in the context of a phase 1 HIV antibody trial (ClinicalTrials.gov identifier: NCT03803605). We designed a series of crowdsourcing activities to collect feedback on three aspects of this clinical trial: the informed consent process, the experience of participating in the trial, and fairness/reciprocity in HIV clinical trials. All crowdsourcing activities were open to members of the general public 18 years of age or older, and participation was solicited from the local community. A group discussion was held with representatives of the clinical trial team to obtain feedback on the utility of crowdsourcing as a community engagement strategy for informing future clinical trials.ResultsCrowdsourcing activities made use of innovative tools and a combination of in-person and online participation opportunities to engage community members in the clinical trial feedback process. Community feedback on informed consent was collected by transforming the clinical trial's informed consent form into a series of interactive video modules, which were screened at an open public discussion. Feedback on the experience of trial participation involved designing three fictional vignettes which were then transformed into animated videos and screened at an open public discussion. Finally, feedback on fairness/reciprocity in HIV clinical trials was collected using a crowdsourcing idea contest with online and in-person submission opportunities. Our public discussion events were attended by 38 participants in total; our idea contest received 43 submissions (27 in-person, 16 online). Facebook and Twitter metrics demonstrated substantial engagement in the project. The clinical team found crowdsourcing primarily useful for enhancing informed consent and trial recruitment.ConclusionThere is sufficient lay community interest in open calls for feedback on the design and conduct of clinical trials, making crowdsourcing both a novel and feasible engagement strategy. Clinical trial researchers are encouraged to consider the opportunities of implementing crowdsourcing to inform trial processes from a community perspective.